Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Thursday, May 24, 2012

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

"Hope sees the invisible, feels the intangible and achieves the impossible." - anonymous

All proceeds from the following events will be donated in Avery's name towards further advancing SMA awareness and research for a cure for Avery's friends.

"Chick-Fil-A-very" - Today, MAY 24, 2012 (4p-8p)Chick-Fil-A Meyerland Plaza location (5001 Beechnut, Houston, TX 77096) is donating 15% of all sales between 4-8pm. This is only valid for this location!

The Harp Irish Pub - Sunday, JUNE 10, 2012 (1p-10p)

The Harp Irish Pub (1625 Richmond Ave, Houston, TX 77006) is holding a fundraiser in honor of Avery and her friends. There will be a raffle, silent auction, live entertainment, food & drink, and a date auction.

Brick House Tavern (12910 Northwest Fwy, Houston, TX 77040) hosted by Denise Wardwell, is holding a March of Dimes fundraiser in honor of Avery and her friends. There will be a raffle, silent auction, music, and food & drink.

Remember, SMA does not discriminate based on geographical location, so neither should fundraisers to stop it! So if the only thing stopping you from participating in any of the above events or any future events is geographical location, then why not start or participate in an SMA event closer to where you live? ALL children and families with SMA need your support!

Click the following links to find SMA events or ways to help in your area:

FightSMA.org is a non-profit which raises awareness and funding for SMA Research.

Items I Can Scratch Off My Bucket List:

1. Have a major fast food chain hold an event for me.

2. Have a party at an Irish Pub.

3. Have a 5k started in my honor.

4. Be a Hero For Babies

Up Next:

Whatever I bring to life through my mommy, my daddy, and through you.

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!

Monday, May 14, 2012

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

Remember...

I was not the first, nor will I be the last. Think of us all and let's kick SMA's...BUTT (I don't know if daddy can still ground me but I don't want to take any chances).

So if you do nothing else, please share my message and help spread SMA awareness! You spreading my message could save future lives and also lead to further funding for a cure from other sources.

"Hope sees the invisible, feels the intangible and achieves the impossible." - anonymous

Hey everyone, I want to introduce you to my newest friend Lucy who was born July 9, 2009. Lucy gives my friends with SMA Type 1 hope for a longer life because she is just a few months shy of her 3rd birthday even though when she was only 3 months old she was given the same diagnosis my doctors gave me...Spinal Muscular Atrophy Type 1. Lucy's mommy was told, "fifty percent of babies born with SMA Type-1 were dead by their first birthday, and almost all (90%) died before their second." Then when Lucy's mommy asked her doctors if any children survived past their second birthday, the doctors just shook their head. Yet, here Lucy is, only a few months shy of her 3rd birthday, and though I never got to meet my friend, I'd have to agree with her mommy when she says, "Lucy's an incredibly happy toddler."

Hey my daddy helped me too!

It doesn't matter that Lucy can't toddle, her mommy & daddy do all of the things for her that she can't do for herself, just like my mommy & daddy did and continue to do for me! Lucy's mommy tells me that Lucy is bright and funny and she loves reading and singing various kid's songs. Oh and she is obsessed with Sesame Street!

I hope your daddy is a better engineer than mine was!

So how has my friend Lucy defied the odds thus far? She met a doctor conducting drug trials in Wisconsin whose name is Dr. Mary Schroth who is recognized as a national leader in the respiratory management of children with neuromuscular diseases. Lucy became part of the drug trial and though the experimental drugs did not preserve Lucy's physical strength, she continues to defy the odds that unfortunately I, along with many of my friends with SMA Type 1, was unable to defy.

So you see there are people out there like Dr. Schroth and Dr. Kaspar, who are still working to help Lucy and all of my friends live longer and stronger lives than "expected" with the intention of one day finding a cure for my friends with SMA. But as of this moment, the reality remains that there is currently not a cure for SMA and my friends need your help!

So here's what I hope for...

I hope through AWARENESS people will know what SMA is and they will get the carrier test. But I also hope people will remember to fund a cure for Lucy & all of my friends who still need your help.

IF YOU DO NOTHING ELSE, PLEASE SHARE MY STORY WITH EVERYONE YOU KNOW AND HAVE THEM DO THE SAME!!!

You can also click here to donate to FightSMA.orgFightSMA.org is a non-profit which raises awareness and funding for SMA Research. They too will help fund Dr. Kaspar and other clinical studies for a cure, however at this time there is no matching donor for donations made through FightSMA.org

Items I Can Scratch Off My Bucket List:

1. Share my friend Lucy's story

Up Next:

Whatever I bring to life through my mommy, my daddy, and through you.

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!

Friday, May 11, 2012

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

I also celebrated with my Nana Carolyn who gave me a hot glazed donut from Shipley's Do-Nuts. She went on and on about how she would drive to however many Shipley's she had to until she found one that had just pulled a batch of hot glazed donuts fresh out of the oven. She even said sometimes she'd wait 15 minutes until a fresh batch came out...whatever that means. All I know is I like her a lot! She's sweet & silly, which is exactly how my daddy described her!

Please remember, while I'm no longer physically here, I live on through each of you. So please continue sharing my story and the stories of ALL my friends with SMA who still need your help! And please know, whether you're telling my story to bring forth SMA awareness or making donations to fund a cure, you are helping!

Once that goal has been achieved, please direct all monetary donations to Fight SMA (www.fightsma.org).

Items I Can Scratch Off My Bucket List:

1. Celebrate my 6-month birthday with mommy & daddy by my side.

2. Share a donut with my Nana Carolyn.

Up Next:Whatever I bring to life through my mommy, my daddy, and through you.

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!

Monday, May 7, 2012

SMA ended Avery's life, please don't let it end her story. Each time I post an update, please share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all of Avery's girlfriends out there, tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing. If we can help save a few of Avery's future friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will be beyond fulfilling in stature.

Thank you to everyone who was able to be a part of Avery's celebration of life this past weekend. For those of you unable to attend, we know you were there in spirit and we appreciate your continued love for Avery. After the service, numerous people approached me and told me it was probably the most inspirational and moving moment in their lifetime. The fact that Avery can continue to inspire people even after she's passed...I don't even have words to describe how it makes me feel.

Avery's celebration of life went exactly as envisioned. From the words being shared, her song being played, flags being waved, the balloon release, and the police shutting down major highways to get Avery to her final resting place, it was all just a truly touching experience and in my opinion an appropriate send off to an amazing little girl.

Below is the eulogy I delivered to the attendees at Avery's funeral:

11 Years ago when my mom died from cancer, I stood before her loved ones and I uttered the words, "Let's be happy for her now, as she was never going to get her life back. There will be plenty of time for us to be sorry for ourselves later, but for now, let's just be happy for her."

Today as I stand here in front of all of Avery's loved ones, I cannot utter these same words to describe how I think we should all feel. Not because I don't believe we should all be happy now and sad later, but because I believe Avery lived the only life she ever knew and she did it very well. Avery showed us what it means to be courageous, she showed us what true love is, and she taught us many other lifelong lessons. And even in her darkest minutes, as she was being rolled into ICU, she looked up at her nurses and she reminded all of us how to keep smiling. So as I stand before you, I will tell you that if I shed a tear today, it's not a tear of sadness for my daughter's passing, rather it's a tear of pride for what my daughter accomplished in her living. Simply put, Laura and I are the proudest parents in the world right now.

Before I share one of Avery's final messages to us, I want to share with you a few comments from other parents within the SMA community. Some of these are parents within the SMA community who have started non-profits to help bring forth awareness & funding for a cure for SMA.

Avery, to me you will always be our most famous SMA celebrity. You didn't charm the world with your song, or dance, neither with your poetry or prose. You charmed an entire planet just because you existed. Your sole essence as human inspired and changed the heart of MILLIONS. I don't know of any other kid in history that in such short age transformed minds, perspectives, visions of life and dreams of so many. You are genuinely unique. Thank you for being part of my life. You definitely affected change in an unprecedented, yet wholeheartedly manner.

Donations are coming from Avery’s hometown in
Houston to Mexico, to Columbia to Australia to The United Arab
Emirates.....AVERY has circled the globe and has taught the WORLD about SMA.... I have prayed every night for this
kind of awareness. With tears in my eyes
I am in Awe of Avery.

Avery
and your family have touched millions around the world, raising incredible
awareness of SMA and reminding us all to cherish every second and live every
day to the fullest.

Avery
your impact is miraculous. What made your
message so poignant was the way you presented your story and your journey
through this disease. In an almost unfathomable way you took the most darkest,
ugliest thing imaginable and miraculously delivered it in a light hearted way.
THAT is what the world connected with. That is why you changed this disease.
That is why you were able to accomplish what nobody else has ever even come
close to accomplishing.

Avery,
I will never let the SMA community forget what you did for them EVER...NO One
has ever done this and for as long as I live, the community will know what you
have done Avery. We have all been
praying for a break for so long, thank you Avery for your bravery. I am forever in your debt.

Here
is Avery’s letter…

Dear
Mommy & Daddy:

If
you're reading this it is because I've gone to take care of my Uncle Bryant,
Nana Carolyn, Papa George, and all my great Grandparents. I hope you know
that I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I
love them too. In fact, tell everyone who loved me that I love them and I
appreciate them caring about me.

Daddy,
remember how you used to tell me that writing stories was a lot easier than
giving speeches, but you hoped one day I'd be strong enough to give a speech?
Well since I'm not here to give this speech I hope you can remember the
advice you gave me and just imagine everyone in the room is in their underwear.
First of all, ewwwwwww. Secondly, sorry to ask this daddy, but by
any chance is Dr. McSteamy, any of the Bellaire Fire Dept, or my catcher friend
Octavio Martinez here today? If so, hubba hubba hubba.

Annnnnnnnnnyway,
like most of you, I'd never heard of SMA prior to being diagnosed with it
and I don't think SMA had ever heard of me either. But now that we've
become better acquainted, I hope to do to SMA exactly what SMA has done to me.
And I hope my daddy was right when he'd say to me, "Don't worry
Scuttlebutt, we'll make sure one day that SMA stands for Shoulda Missed
Avery." And when people think of me, I hope they’ll also think of
all my friends who have been through this and who are going through this now.
But what I really hope for is that people will STAND UP in honor of me
and spread awareness to prevent this from happening in the future while at the
same time helping to fund a cure for my friends already going through this.

Before
I conclude, I want to say thank you to everyone who helped me through life and
who loved me. Please know that I hope I was able to help you and that
through each of you I will continue to live. And to all my SMAns, you
followed me, now please continue to follow all of my friends!

In
conclusion, Mommy. Daddy. I love you every bit as much as you
love me. And while I'm not here physically, I will forever live in your
minds, as you will mine. Mommy please take care of daddy. Daddy
please take care of mommy. And before I say my final goodbye, there was
one thing I waited to add to my bucket list until I felt the time was right.

I
want to be a big sister someday.

With
all of my love,

Avery Lynn Canahuati

Needless
to say, Avery inspired Laura & me like we’ve never been inspired
before. Her beautiful blue eyes lit up
our house and her smile engulfed every emotion in our bodies. Her presence on Earth while short in time,
will be fulfilling in stature and everlasting in our memories. We want to thank you again for accepting
Avery into your lives while she was here and for letting her live through each
of us now that she is gone. We sincerely
feel the love and support and we know from what you all have told us that Avery
has made an impact on each of your lives as well as millions of lives around
the world. I
leave you with this…

“There’s nothing we control in death.
But we control everything in life.”

Once that goal has been achieved, Avery asks that all monetary donations be made in her name to Fight SMA(www.fightsma.org).

THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR SUPPORTING AVERY'S FRIENDS WHO ARE STILL OUT THERE!!!

Items We Helped Avery Scratch Off Her Bucket List:

1. Celebrating her life to the fullest

2. Shutting down two major highways in Houston (sorry!!!)

Up Next:Whatever I bring to life, because I just don't have time to wait for life to bring things to me.

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

Saturday, May 5, 2012

As we celebrate Avery's life on Earth today, please remember she now continues to live through each of us. Continue to share her story, teach others about SMA, and help fund a cure for those currently battling SMA. Avery's life, her bucket list, and her blog will continue through each of you. SHARE THIS WITH THE WORLD!

An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all future monetary donations be made in her name to Fight SMA (www.fightsma.org).

and remember...

"We are all born pure & innocent. We can let the world change us, or we can change the world."

-My Daddy-

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

Wednesday, May 2, 2012

Please remember, just because Avery is no longer here doesn't mean we can't continue to learn from her. So as Avery would urge you to do at the beginning & end of all her posts...

"Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature."

Just a quick update to one of Avery's last Bucket List goals...

An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all future monetary donations be made in her name to Fight SMA (www.fightsma.org).

and remember...

"We are all born pure & innocent. We can let the world change us, or we can change the world."

-My Daddy-

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

Tuesday, May 1, 2012

Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago.While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends. I'm going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right...Dear Mommy & Daddy:If you're reading this it's because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I love them too. In fact, tell everyone who loved me that I love them and I appreciate them caring about me.When I started writing my blog, I thought I'd only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.You see, I'd never heard of SMA prior to being diagnosed with it, yet there's thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene. Without awareness and without a cure, I'm afraid more of my friends are at risk to have their lives drastically shortened by SMA.When people think of me, I hope they'll also think of all my friends who have been through this and who are going through this now. But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future). And they can do so by spreading awareness and helping to fund a cure for my friends.To all my SMAns, you followed me, now please follow all of my friends. Mommy. Daddy. I love you every bit as much as you love me. And while I'm not here physically, I will forever live in your minds, as you will mine.

Love always,

Avery, Aviator, Aves, ScuttlebuttAlso, before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends. I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery's Bucket List and help her complete items she was unable to. And when you do, take pictures and send them to Avery's Bucket List so we can show the world and continue to share Avery's message.

One of Avery's newest Bucket List goals was to help raise the remaining $365,000 (out of $1mil) needed to bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all monetary donations at this time be made in her name to Fight SMA(www.fightsma.org).

Here's the last picture we ever took of Avery. It was taken approximately 15-20 minutes before her lung collapsed and she went into cardiac arrest. She was sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying "Hi".

SMA, you did not take my smile away!

THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR CONTINUING TO SUPPORT AVERY'S FRIENDS WHO ARE STILL OUT THERE!!!

Items I Can Scratch Off My Bucket List:

1. Not let SMA take my smile away

2. Take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).

Up Next:...I found a few archived blogs that Avery never posted...give me some time and I will share them as well as many stories of other children with SMA (past & present).

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!